HONOLULU — For most of his 15 years, Ryan Edghill-Pearson was trapped in a prison of silence like many people with autism — he couldn’t speak.

“My son used to have such rages, it’s the frustration of not being able to communicate,” Janet Edghill said, and to make it worse his lack of speech led others to vastly underestimate his intelligence.

“For years, I believed my son was profoundly cognitively impaired; I didn’t think he knew anything. I thought he was a toddler in a teenage body,” said Edghill, who lives in Kailua with Ryan, husband Tom Pearson and three other children.

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For the past year and a half, Ryan has learned how to literally spell out his feelings through Spelling to Communicate, referred to as S2C, a controversial method developed in 2013 by Elizabeth Vosseller, a speech pathologist and founder of Growing Kids Therapy Center in Virginia.

The breakthrough didn’t happen right away, said Edghill, an adviser to the Hawaii Autism Foundation. It took several months working with a specially trained assistant three times a week, in addition to consistent practice with his mother, before he was able to express himself. Ryan learned on an alphabet board initially but has transitioned to using a computer keyboard.

Asked how his life has changed since he learned S2C, Ryan typed, “I can now communicate my thoughts.”

Then he wrote: “I want to participate in regular classes in school,” bouncing up and down with his excitement in his chair at the prospect.

Ryan became agitated as he spelled out his answers, but he was determined to do it to help other kids like him, Edghill said. All pistons were firing as Ryan let out a litany of squeals, grunts and other sounds, frowning, scratching his head and gesturing as he pointed to the letters. Sometimes he got out of his chair and jumped up and down to release stress.

Asked if learning S2C was difficult, Ryan wrote that learning the method was “not very hard,” that the most frustrating thing was “people not believing that I am capable.”

Without being able to openly communicate all these years, he couldn’t fully participate in society as it was difficult to study, make friends, get a job and the like, said Edghill, a former electrical engineer who also obtained a doctorate in education to better help her son. She explained that language is a cognitive skill, but writing and speaking are motor skills that are challenging for about 40% of kids with autism who have a condition called apraxia. Since writing and speaking are the usual methods to test abilities, she said, these kids have not been able to demonstrate their intelligence.

“That’s all what Spelling to Communicate is about: It’s to overcome the mind-body disconnect,” she said. It develops a person’s motor skills, enabling them to move their arm and point to an alphabet board.

Edghill hopes the Hawaii Department of Education will make S2C a part of its approved curriculum so other students can benefit, but until then the department has agreed to allow Ryan to use the spelling board as a “preferred method of communication.”

At an individualized education program meeting in August, Ryan was able to express that S2C was his choice of communication in keeping with rights outlined by the Americans with Disabilities Act, Edghill said. Ryan spelled out his goal: “I want to go to college.”

The DOE will allow a staff member to be trained to assist him in using the spelling board and will transition him into general (vs. special) education classes, Edghill said.

The S2C method is controversial because of doubts expressed by the American Speech-Language-Hearing Association over whether the person with autism is being prompted or physically guided by a facilitator to select the correct letters. The association also states S2C creates dependence on another person to use the alphabet board.

Hawaii’s Office of Student Support Services explained in an email why the DOE doesn’t use S2C:

“In addition to not being endorsed by the American Speech-Language-Hearing Association, there is currently a lack of research and scientific evidence supporting this method of communication. The Spelling to Communicate method also relies on an aide for prompting and the department’s overall goal for students who are nonverbal or have minimal/low communication skills is to promote independence as a communicator.”

S2C advocates say its method is often confused with Facilitated Communication and the Rapid Prompting Methods, which are also debunked by ASHA. S2C advocates argue that the main difference with S2C is that the facilitator is not physically touching the student.

Ralf W. Schlosser, a professor of communication sciences and disorders at Northeastern University and an ASHA adviser, explained that touching is not so much of an issue as the prompts given by the facilitator, who holds the alphabet board in front of the student. Research has demonstrated that the aide may inadvertently or subtly shift the board to move it in the direction of the correct letters, or influence the students in other subconscious ways. The board should be stationery and not be held by anyone, he said.

Schlosser said S2C and similar methods also cause students to be dependent on prompts by a facilitator, when the goal should be to eliminate the need for prompting. If a student has motor control problems, there are technological ways to mitigate their difficulties without depending on a facilitator to hold the board.

While the method has detractors, others tout the positive effects of S2C.

Renee Dieperink has been working with Ryan for over a year as a certified S2C “communication regulation partner” or trainer; she services several students ages 15 to 30. She works full time as a Windward district resource teacher with the DOE and previously spent 31 years teaching reading and spelling as an elementary school instructor.

Dieperink said she was inspired to become a trainer after reading the book “Underestimated: An Autism Miracle,” written by J.B. Handley and his son, Jamie Handley, who has autism. The book tracks eight teenage “nonspeakers” who learned the S2C method. At least one went on to college.

When students with autism first learn the method, they don’t only point to a letter, they are asked to choose a letter by poking a finger through an alphabet board that looks like a stencil. The board is held in front of them. The poking builds their stamina and hand-eye coordination, and improves their motor skills overall to develop more purposeful movement, as many cannot control their hands and arms, she said.

“I’m not guiding his arm anywhere,” Dieperink said.

Gradually Dieperink will transition him to using a keyboard that is mounted on a stand, then a table.

Dieperink took the six-month trainer course for $3,000 two years ago, available through the nonprofit International Association for Spelling as Communication, which refers to itself as I-ASC. Vosseller is its executive director. During the course, trainees attend lectures and work with four individuals with autism, and each session is recorded to enable trainees to review and assess their progress with their mentors.

Dieperink said parents pay her $80 an hour for private tutoring and the cost is not covered by health insurance.

Students can spell their thoughts within months or a year, depending on how often they practice, she said.

“I am amazed that they all know how to spell correctly, so somehow they can pick it up,” she said. “They have an insane memory. They cannot speak so they instead have used their energy to retain more information. They can see or hear something only just one time, and they will remember it.

“As a teacher, I love nothing more than to see something that works. I feel really great I can help and develop this skill. We’ve shared some very emotional moments when their parents realize their kids are fully in there — they’re not cognitively impaired, they do understand everything,” Dieperink said.

Edghill said, “We were told for years that our children were profoundly retarded.” She cited a 2023 study by the Journal of Developmental & Behavioral Pediatrics that found 2 out of 3 children with autism do not have an intellectual disability.

“Our kids are in there, it’s just finding the right person and the right method to get them out,” she said. “Learning Ryan was ‘in there’ has made such a difference in our relationship. I no longer talk to him in a childish sing-song voice as if he were a toddler.

“It’s all just been amazing, our life has completely changed. And now he tells me he wants to go to university and wants to study neuroscience, he wants to help other people like him.”

© 2023 The Honolulu Star-Advertiser
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